Small Things Stir Big Questions: Ethics and Nanodiagnostics
Detecting infinitesimal changes in body chemistry may be the next big thing in diagnostics. But is it the right thing to do?
Simply put, nanotechnology is the science of building stuff from single atoms and molecules. One area of nanotechnology that shows great promise, nanodiagnostics, aims to provide extremely accurate, early diagnosis of disease, long before symptoms even begin to appear.
But some people wonder if it’s always a good thing to know the future, especially when it comes to health. So we talked to Evanston resident Laurie Zoloth, the director of Northwestern University’s Center for Bioethics, Science and Society. She is also professor of medical ethics and humanities at Northwestern’s Feinberg School of Medicine and professor of religion and director of the Brady Program in Ethics and Civic Life at Northwestern’s Weinberg College of Arts and Science.
Conventional wisdom says “the earlier the diagnosis, the better.” Do you agree?
For things we can treat, I strongly agree. For cancer, early detection is the most effective tactic we have. Even with today’s technology, the ethical issues become more complex when there are no treatments for a fatal condition that in the worse cases, like Huntington’s disease, is also degenerative. And the potential of nanodiagnostics adds new ethical issues.
What new ethical issues would nanodiagnostics make society consider?
The current framework for all our laws and ethics about diagnosis revolves around genetics. However, in all but a few rare diseases, such as Huntington’s or Tay Sach’s disease, genetics really only provides estimates of increased risk of developing an illness. The breast cancer genes are a good example. Women who have some breast cancer genes are at increased risk, often great risk, but yet don’t know for sure that they will actually develop it.
Nanodiagnostics promise to be much more accurate much sooner, so HIV/AIDS may serve as a more useful analogy than genetic testing, in a sense. Once we establish that a person has the AIDS virus, no matter how healthy that person is, we know that person is HIV positive and we know much of what that entails.
So the question for society becomes, as earlier and accurate diagnosis becomes the norm, which is such a good and important goal of nanodiagnostics, what will knowing about serious disease long in advance of symptoms entail? What is our duty as a society toward people who are diagnosed?
For example, researchers believe neurodegenerative diseases such as Alzheimer’s are good candidates for nanodiagnostics. How early does such a disease manifest? When do subtle decisions become too difficult to make along a continuum of a disease that attacks rational decision-making and memory? In this case, would someone like Ronald Reagan be able to run for president? Would we require all airline pilots to be tested so we know if they will become cognitively impaired? How about school bus drivers? It’s not just what the individual will choose to do; we will need to decide what society can and cannot do with the information.
Between the new recommendations for women’s health and the debate on health insurance reform, Americans have run smack into something scientists have grappled with for decades: reconciling evidence and anecdotal experience. Are there implications for nanodiagnostics?
Yes. Perhaps the greatest promise of nanodiagnostics is that we could really know the changes in our bodies at the earliest chemical signal. In this sort of future, one might speak of “molecular symptoms” in the way we speak of physical symptoms. A hope is that such early and portable tests might replace big, expensive, late-stage, less-accurate screening tools such as mammography, PET or MRI scanning—equipment that costs millions to build, buy and maintain.
It’s critical that we learn what medical interventions actually save lives and reduce suffering, and that will mean serious reconsideration of some guidelines that we thought were important, that protected us. Yet it’s always very difficult when the evidence contradicts personal experience, especially when it feels like something is being taken away and the only thing replacing it is an abstract or statistical idea.
But we have to think about what we really want – if we want to improve the quality of health care, contain costs, and thus allow more access for all. If large, well-controlled studies show that expensive tests make us feel better but don’t improve outcomes, we need to think about giving up the tests that do not work, and work hard to support the creation of new tools for better diagnostics. That is ultimately the point of medical research, and nanotechnology is a part of that effort.
Please expand on the issues surrounding early diagnosis even with today’s technology.
For some people, knowing you are facing death and knowing about its timing could allow you to change your life in a good way. Planning for experiences you might put off or caring for relationships you might take for granted is good, and many people who face terminal disease say they develop a new and richer appreciation for the world. But for other people, knowing you are a patient with a fatal illness, long before you feel sick, can have serious consequences. You must face the fact of death far earlier in your life then you would otherwise, insurance companies and employers may see you as an unreasonable risk, and for many, you may be stigmatized by your illness. For many people, such a diagnosis can change how they see themselves and how others see them in troubling ways.
Are you concerned that people could face discrimination for health problems they would develop at an undisclosed time in the future?
Yes, that’s one of my concerns. But I am also optimistic. We could, as a society, learn another moral lesson, one of increased empathy. For wouldn’t it be lovely if instead of becoming more fearful of what is seen as illness, we changed our idea about what is normal? If testing is widespread, we all may learn about disease we did not know we’d face, and we might face them better together. If we all know that we are frail and imperfect, it might make us altogether better and so much less petty. We could revise our idea of the norm in a way that is more accepting.
Northwestern is the home of one of the premier nanotechnology research centers in the world. Based on that, can you predict how soon nanodiagnostics might become available?
I never speculate, but we often hear people say “the next breakthrough will be here within the next ten years.” I call that “decaphilia” because there seems to be something attractive about the future being only a decade away. But science is so uncertain and unpredictable that I often tell my students not to be entirely focused about the distant and unknowable future. What we need to do is focus on what’s happening now – is scientific research being conducted ethically? Is it relating appropriately to the marketplace and being conducted for the common good? Is the research honest and free of bias? Is it safe for individuals and for the environment we share? Is it a just use of scarce resources? If we worry about these things, we can hope to shape the research as it develops. Our job is to raise the moral questions at the bench of the research scientist.
Several nanodiagnostics are currently in clinical studies. Are the ethical issues the same for these as for studies of conventional medical interventions?
The issue here is that sometimes when nanotechnology is used in medicine it’s considered a drug, and sometimes it’s classified as a medical device or surgical procedure. The Food and Drug Administration has a very strong system to review drugs, but the reviews for the other interventions can be less stringent. People complain that the new drug review process is too slow, but it’s slow because it’s careful. Since there is a question of safety when new techniques are developed, it is prudent to be careful about nanotechnology. Careful clinical trials, in which nanotechnology used in medicine is reviewed within the FDA process, allows for greater public understanding and acceptance.
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